Endometriosis is not straightforward. It is a disease where cells similar to those lining the womb grow elsewhere in the body. Where they grow, how much they grow, how deep they grow, and what they interfere with will vary from person to person – and so each individual with the disease experiences a different range of symptoms, and to a different severity. Despite affecting 10 per cent of women of reproductive age – 1.5 million in the UK, 176 million worldwide – there is no cure, and treatments are not always helpful and can come with risks or side effects.
The average length of time to get a diagnosis is, shockingly, 7.5 years. Being an average this masks a significant range – from women who receive great support and are diagnosed in just a few months because their GP suspects endometriosis early on and navigates the route to diagnosis efficiently, through to women for whom diagnosis takes 15 years or more. Before a diagnosis, effective treatment options cannot easily be offered. Before a diagnosis, a woman may be told her symptoms are ‘normal’, may be misdiagnosed with another condition, or may even be told her symptoms are ‘in her head’. They may miss work or education, unable to put a name to their ‘problems’, hampering their careers – endometriosis costs the UK economy an estimated £8.2bn a year in treatment, loss of work and healthcare costs. This is no way for women to be treated in the 21st century.
There is no doubt that endometriosis can sometimes be a challenge to diagnose and to treat. Symptoms are shared by a range of other conditions – chronic pelvic pain can be associated with pelvic inflammatory disease, fibroids, irritable bowel syndrome and painful bladder syndrome, to name just a few, as well as due to endometriosis. Endometriosis doesn’t always show up on scans and the only definitive diagnosis at present is through surgery, so it makes sense to rule out other conditions first if that can be done less invasively. But endometriosis should be considered when a woman has one or more symptoms, and sadly that doesn’t always happen.
There are steps that we can take to significantly reduce diagnosis times and improve the treatments women are offered. Raising awareness of menstrual health and what’s normal as part of education in schools, so no-one puts up with years of pain and other problems thinking it’s ‘normal’. Raising public awareness – after all, this affects 10 per cent of women irrespective of race or socioeconomic background, so shouldn’t everyone know about it? We need tools and guidance to help GPs, as well as wider availability of resources to treat women effectively, so women don’t have to wait months – sometimes years – for surgery they very much need. Investment in research is vital to find answers about what causes endometriosis and effective treatments.
Vitally important, we need to support women with endometriosis, or who suspect they might have it, to ensure they have the information and support they need to help manage their condition. And this is where this book comes in; we hope it will provide help to women, and all those that support them, to navigate through their journey with endometriosis.
Many thanks to Carol Pearson and Professor Andrew Horne, our authors. Together they have produced this expert guide through their knowledge and many years of experience working with and championing the needs of women with endometriosis, bringing together the voices of patients and clinicians.
Emma Cox,
CEO, Endometriosis UK,
2017